Life, or Something Like It

As a teacher of students with moderate, severe, and/or profound disabilities, I've been watching the Terri Shiavo thing with deeply mixed feelings.

As the one person, who had apparently expressed a wish not to be kept alive by "extraordinary means," then I think she has the right for her wishes to be fulfilled, if indeed she had expressed that wish.

And, more to the point, if she is truly in a persistent vegetative state, which is probably what she was referring to if and when she expressed that wish.

I don't think that a feeding tube, in and of itself, is a truly extraordinary measure -- though I've heard commentators during this case who talk only of that...of the fact that she "can't even eat on her own." As if that, in and of itself, is indicative of the extent of the damage to her brain.

The thing is -- swallowing is a complex task. I've known three students that were fed via a G-tube. All had severe developmental disabilities -- but they were far from nonresponsive. One walked, explored his environment, and learned to recognize his name in print. One showed her recognition of people she liked with a wide smile and by lifting her head up so she could see them better. The other laughed, grinned, and rhythmically banged her feet against the feet rests on her wheelchair when people joked with her.

So as someone who has known kids with severe disabilities -- what worries me about the Terri Shiavo case is two things.

First -- I don't know that anyone could know for sure that the smiles and eye movements that she shows on videos are reflexes and nothing more. I think to know that for sure, people should be exposing her to cause and effect devices to see if she is doing these things intentionally. If she is, or can be taught to, that changes the dynamics of the case.

It's certain that she has severe to profound disabilities...but that is not the same as being "a vegetable" or having no quality of life. I don't know that she could be taught to speak again, as some have claimed, but if she truly does recognize people, even sometimes, then rehabilitiation should have been at least attempted, and the people that claim her husband was neglectful have something of a case.

Second -- the attitude behind this concerns me deeply. The attitude that the life with a severe disability is not worth living worries me not only because I have seen, first hand, children and young adults with severe disabilities enjoying life. They are not miserable because of the challenges they face. As long as they are surrounded by people dedicated to giving them as much appropriate support and autonomy as possible, to empower them and to allow them control over their own lives, their lives aren't the misery people perceive them as.

I've known students with severe physical disabilities, severe cognitive disabilities, and students with both physical and cognitive challenges.

All of them laughed, smiled, cared for people around them, and in general lived the same lives you and I do -- with differences, with challenges, sure, but fulfilling lives nonetheless.

It was not too long ago that people would have looked at my brother, whose cognitive challenges are far less than many students I have known, and claimed that he would be best institutionalized because he would have no quality of life anyway.

The world has changed -- but not enough yet, I don't think. It's like people that no longer pity people with paraplegia but still felt like it was best that Christopher Reeve died, because life with quadriplegia surely wouldn't be worth living.

This is the danger, I think, of the Terri Shiavo case, and why I'm so torn about it.

There is the part of me that absolutely believes that this is her decision, and so be it.

But there's the nascent activist in me, who still sees every day people who think my kids' education isn't inherently as important as other kids' education, who sees people who can't imagine what they'd do if they had a child like A., who sees my kids' lives as somehow less enjoyable than their own simply because they don't read, or don't understand math, or are learning to communicate -- that part of me hates the spectacle that is being made about a life that other people see as not worth living.

If you want to know what life is really like for people with disabilites -- just get to know some people who happen to have disabilities. Voluneer with the Special Olympics, or contact Best Buddies.

The funny thing is -- I bet you'll get even more out of it than the people you get to know.